First Post - The ONE thing I wish I'd known about/done when I was younger.

Crossposted as this forum seems to have a lot more activity!

This is the first time I've posted here so a brief bit of background. My name's Brian, I'm 33 and I have a port wine stain on my face. Looking back on my younger days I want to pass on the one thing I wished I'd known about and done when I was younger, rather than waiting till I was 27.

If you're young and have something like a port wine stain, seriously think about getting into for want of a better term is called the 'alternative' scene. This is for two main reasons.

One - these people are the people who don't fit into conventional society already. This promotes a certain solidarity and camaderie, and makes them far less judgemental on people who don't fit in for other reasons - facial disfigurements, homosexuality, unusual sense of style etc. They're all misfits already!

Two - OTT makeup is common on both girls and guys! You don't have to agonise about whether someone might notice you're wearing makeup, or that it's unusually heavy or anything like that - You'll look like any other goth or mansonite.

This isn't a solution for everyone, but if you're coming up against things in the conventional social scene that you just don't want to be dealing with it's worth a shot. Maybe I'll get grief - "mainstream society should just accept us and treat us no differently!" type rants, but I'm talking about real life, not some non-existant utopian ideal. And I KNOW it works from personal experience. There are many paths to dealing with facial disfigurement, and this one is as valid as any other. Whether we like it or not, we do get treated differently, and anything that can eliminate that is worth consideration.

I wish someone had tolde me about this a hell of a lot earlier than I did, I could've saved myself a load of grief.

So if you're young and worrying about how your'e going to fit in anywhere, maybe this is the thing for you. But hey - it's just my opinion - make up your own minds!

Re: First Post - The ONE thing I wish I'd known about/done when I was younger.

I guess I can't say that I would advocate getting involved in a non conforming culture or group because of a facial difference. Or for that matter, any difference. Yes, perhaps there seems to be acceptance...but at what cost? In fact, I don't believe it's really acceptance, but rather indifference and that, IMHO, is an unacceptable outlet.

No...mainstream society may never conform, but what we need to remember is that this is a medical condition...not simply a cosmetic condition. Society is always going to have it's own opinions about everyone.."too fat, too skinny, too ugly, too poor...etc.". We won't ever change human nature....but we do need to help change the laizze faire attitude of some of the medical community.

My child, the children of others here, the individuals facing these same obstacles, and yourself...should not have to just sit back and feel like we might have to conform to unconventional society while we wait for the majority of the medical community to get on board. Instead we should be demanding the education of the medical community, and the research needed to treat these conditions. We applaud the small but growing group of specialists and doctors that have dedicated themselves to these vascular conditions, or at a very mininum, educated themselves. But there is far more territory to cover.

Perhaps we've been chosen to educate and inform. We have the opportunity to help clear the path for future generations, and to support the continuing education of the medical community in this often overlooked field of medicine. We are living in a groundbreaking age for vascular malformations and their treatment. We are in a unique, and yes, powerful situation. We are advocates, not because of choice, but simply empowered by our own need for answers. And yes, the unfortunate part of this journey is unacceptance by some.

Believe it when I say I am NOT looking forward to calming my own son's fears as he grows up and looks different. I want someone to FIX him!! As unreasonable as that is at this moment...I'm sure I'm not alone in my feelings. I can't even tell him or you I understand....because I'll never really know exactly what it's like to live with it every day.

I understand that you are writing from a social acceptance view, and I'm definitely not flaming unconventional choices. But I do feel these choices should not be made because of an unaccepting society.

Perhaps for this generation, the facial differences will always be a factor in life. But my question is why should it have to remain this way? We have the unique opportunity to try and help future generations affected by vascular malformations and birthmarks.

Think of it this way. What would have happened to our society if the parents and individuals affected by polio, syphilis, leprosy, and other conditions that defined them as "different" (all now avoidable or curable) just sat back and let the world run it's course without demanding medical advocacy for themselves and their children?

Re: First Post - The ONE thing I wish I'd known about/done when I was younger.

Julie-
I don't encourage becoming part of the conforming mainstream. It's not healthy for anyone, PWS or not.

Brian-
I concur. I'm Allison, 20 yr old in Portland, PWS on my left cheek, love the punk scene. They have been way more accepting (less comments and snide remarks) then the general public. And if someone insults me, it's okay to sock them 'cause I'm in a mosh pit! Anyways, I enjoyed your bit.

Mission Statement:
An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate
medical professionals for evaluation and/or treatment, provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and
supports research and programs that promote acceptance for individuals with birthmarks.

DISCLAIMER
Information accessed through the VBF is presented in summary form
in order to impart general information relating to the diagnosis
and treatment of vascular birthmarks. Such information is not complete
and should not be used as a substitute for a consultation or visit
with your physician or other health care provider. Information accessed
through VBF website is not exhaustive and does not cover every aspect
of vascular birthmarks. VBF makes no warranty as to the information's
completeness, reliability or accuracy. Should you have any health
care related questions regarding this matter, please see your physician
or other health care provider promptly.

Information accessed through the VBF website is provided "AS
IS" and without warranty, express or implied. All implied warranties
of merchantability and fitness for a particular use or purpose are
hereby excluded. VBF shall not be liable under any theory or indemnity.
In no event shall VBF be liable for any damages, direct or indirect,
and all other damages, direct or indirect, special, incidental,
consequential or punitive, are hereby excluded even if VBF has been
advised of the possibility of such damages.